RLS experts UK?

[Butterflysun1]

I’m sorry this question will have been asked before, but I would be very grateful if any of you have found a good RLS expert in the UK could remind me of the names & where they are based. Even better if you happen to know if they do private consultations as that is likely the only way we would be likely to achieve a cross region referral to someone good.

A few years ago I did have a phone consultation with someone from London who advertised as a RLS specialist but quite honestly his advice was rubbish!! ( name forgotten but I wouldn’t post anyway )

Today while attending a haematology appointment related to the likely cause of my neuropathy I decided I’d try to ask about IV iron & took along the Mayo updated algorithm. Drs don’t like their appointments being hijacked for another reason I know but I thought he might buy it……

He did agree to check Ferritin which is hard enough to get computer requests to acceot these days, but was very wary indeed of considering IV iron without the advice of an RLS specialist. I’m not keen either & he did mention the risks but as we all know this dreadful RLS is life altering.

Also have any of you had success with IV iron & if so how often do you need to have it repeated.

[Hidden]

I consulted prof Walker who practices in Queens Square London.

He was understanding and prescribed medication which worked for me.

[Butterflysun1 in reply to Hidden]

Thank you very much.Can I ask if you live nearby or whether this was a cross region or private referral?

Do you have PLMD as well as RLS or just one of them?

Did he insist on a sleep study? ( I think I can describe pretty well what happens without this! )

If private does he allow self referral or does it have to be via a GP?

Thank you very much for your info

[Hidden in reply to Butterflysun1]

I have rls. I live in London. He didn't mention a sleep study. It was a private appointment which I secured though his website.

Hope this helps.

[Butterflysun1 in reply to Hidden]

Definitely does help, thank you

[Boldgirl45 in reply to Hidden]

Hi Summy - I also have a couple of questions 😅. Does he do online consultations do we know ? (My mum loves in Shropshire). Also does he know all about dopamine agonists withdrawal ? Finally, will he prescribe Buprenorphine do you know? Thanks so much!

[Hidden in reply to Boldgirl45]

Google his website. I don't know the answer to these questions sorry. Good luck

[Boldgirl45 in reply to Hidden]

No problem Summy - appreciate the recommendation to Butterflysun1 😁

[Butterflysun1 in reply to Boldgirl45]

Hi Boldgirl.I googled him after Summy had replied to me yesterday, found an email address for the private appointment site at his hospital & asked a few questions including does he do online appts. I received a reply 1st of all saying the email was monitored every day Mon to Fri then later a ‘proper’ reply saying she’d forwarded my message to his secretary & I am now waiting for the response

[Boldgirl45 in reply to Butterflysun1]

Thanks so much - would love an update when you receive a response !

[bedith6 in reply to Butterflysun1]

I have been seeing Dr. Bagery who practises at the Barberry Clinic Birmingham. He is helpful and knowledgable about RLS. He has prescribed Temgesic for me although it is not working particularlywell at the moment. He is giving me a face to face appt soon to discuss an I.v. Iron infusion. Hope this helps.

[Butterflysun1 in reply to bedith6]

Thank you very much

[Boldgirl45 in reply to bedith6]

Hi - do you know if he does 'self referral' - ie so you don't have to go through your gp?

[Joolsg]

I've recommended Prof. Walker to several people on here and they have all said he was helpful and pleasant. He will consider iron infusions and does phone consultations but his NHS waiting list is over a year. I believe he takes self referrals for his private work. I had an Injectafer infusion at St George's, Tooting, in 2018 but I'm in the 20% that show no improvement.60% have dramatic improvement and I haven't heard of anyone having a bad reaction.

[Butterflysun1 in reply to Joolsg]

Thank you so much Julie. I’ve emailed Prof Walker this am & await his response Kind Regards,

Alison

[Cobobay in reply to Joolsg]

so wish I had someone like this here in Guernsey, I was referred to a Parkinson's Doctor ath he didn't really help just told me it would get worse and he sympathised with me. Told me to up ropinerole up to 8mg if needed. Told me to come off my sertraline and if any other problems to get back to him and that was it, although I thought what was the point as he didn't really do or say anything apart from say I could try the patch. So fed up right now.

[Joolsg in reply to Cobobay]

That's the problem. Parkinson's doctors are familiar with prescribing high doses of these dangerous drugs but they don't see enough RLS patients to recognise that dopamine agonists feed the disease and make it so much worse. We're all in the same boat. There are only 2 or 3 neurologists who know enough for me to trust them.

We have to educate ourselves and read all the research because our doctors refuse to do so.

8mg Ropinirole is disastrous for RLS and will cause very intense, severe all over 24/7 RLS.

Dr. Winkelman talks about it on this article.

sleepreviewmag.com/sleep-tr...

healthiersleepmag.com/restl...

If you're on Ropinirole/Pramipexole and the patch, the only thing is to slowly get off them.

Sertraline and all other SSRI, SNRI & tricyclical anti depressants trigger or worsen RLS for the vast majority so they should be discussed with your GP and acceptable alternatives can be used, like trazodone, wellbutrin or a benzodiazepene for anxiety.

Dr Buchfuhrer correctly says that 97% of RLS patients can have their RLS fully controlled if the neurologist/GP knows enough about RLS. Dr B is right, the neurologist you saw is wrong.

Many people have been told their RLS will get worse & nothing can be done but there are other treatments that should be considered.

Iron infusions, Alpha2Delta ligands, low dose opioids.

Maybe you should get back to him, tell him you're suffering augmentation and want help reducing your 4mg Ropinirole by 0.25mg every 2 weeks. I guarantee you're suffering augmentation of symptoms and the only solution is to get off all dopamine agonists. Slowly.

Tell him about the Mayo algorithm for RLS and ask him to consider iron infusions and prescribing opioids to get you through Ropinirole withdrawal ( it's hellish) and prescribe pregabalin to replace the Ropinirole.

If iron infusions and pregabalin don't cover the RLS ( allow 2 to 3 months to give both time to work) then opioids are highly effective. Read all the posts about Ropinirole/Pramipexole and augmentation and the Mayo Clinic Algorithm. The more you learn, the better you will be treated.

[Edward567]

I have RLS and take four Pramipexole per day. I also have haemachromatosis which is TOO much Iron and have regular bloodletting ie nearly a pint of blood removed. So my problem seems to contradict as with most people they have not enough iron. Can anyone explain this ?

[Butterflysun1 in reply to Edward567]

I think it’s not enough iron in a particular part of the brain rather than not enough iron in general. Folk who are low in iron are more likely to have not enough in this brain part but many have plenty body iron but it just can’t get into that section ( some sort of genetic defect prevents ). The higher our body iron is the better chance it will get into the brain but it doesn’t apply to 100% of RLS sufferers, I think maybe 60% or so. That is my understanding anyway

[Edward567]

Thank you for explaining to the best of your knowledge. Did you see the TV documentary on RLS? I suppose everyone has by now, but they never mentioned any medication.

[Butterflysun1 in reply to Edward567]

Yes. I saw it and was disappointed like I think many were.